Tuesday, December 16, 2014

That's the Way

     I almost always have Pandora playing when I sit down to blog, probably because it helps distract a part of my brain enough to let me focus on getting things out in a cohesive order. Tonight, for example, AC/DC and Guns N Roses are doing a fine job keeping me entertained and happy. I know it's nine days before Christmas and I should probably be trying to get in a more seasonal mood with any of the dozens of Christmas stations Pandora has ready to go, but what can I say? Power chords make me cheerful. And right now, despite the fact that I've worked late every night for more than a week and likely will continue to right up until my office closes for Christmas, I'm happy. I feel good about my husband's health and the the general state of our corner of the world for the first time in months.

     A lot of that has to do with the fact that he's still rocking right along with his fentanyl patches, and even his primary care physician was delighted with the length of time he's been able to stay out of the emergency room. It's no small feat, let me tell you, what his medical professional has been able to accomplish with those innocuous-looking strips of plastic. Nobody in St. Louis managed it, despite their best attempts, and it took damn near a year in Charlotte before we stumbled onto this new plan. Not that I really care who figured it out or how; we were at the point that a juggling monkey could have walked up to him and suggested a magic potion and we probably would have tried it. Exhaustion and desperation does weird things to your head, kids.

     Still, that's not the main reason both my husband and I have been in such a good mood lately, a downright festive one. (This is a particular accomplishment for my husband, who's generally rather Grinch-like when it comes to the holiday season.) This year, we make what was probably a not the wisest financial decision, but one that feels better and more right than just about anything we've done in a long damn time - we tried as hard as we could to make Christmas as awesome as we could for a family back home, because they wouldn't have had one otherwise, and neither one of us could stomach that.

     See, the main newspaper in St. Louis, the Post Dispatch, runs a series every year around the holidays, The 100 Neediest Cases. I remember seeing these even as a little kid, and every year, I was always heartbroken reading about these families, many of whom were in dire situations due to medical issues and disabilities. (Most people have no idea how the extra bills that are part and parcel of less-than-stellar health can blow your budget out of the water; we know that fight.) We always participated in what many call an Angel Tree at the church I attended as a child, and I know my mom routinely collected the clothes and shoes my sister and I outgrew in order to donate them, but that was about as hands-on as I could get at that stage of my life.

     My parents were never what you'd consider well-off, or hell, even financially stable. We were, and are, lower working-class and still somehow, my sister and I grew up mostly ignorant of the challenges my parents faced on a weekly basis, compounded further when my father's cancer was discovered the summer I was twelve. My dad underwent radiation and chemotherapy to try and shrink the tumor before undergoing surgery that fall, and still worked 40+ hours a week, because we had bills to pay. Even after learning, much later, that it took them over a decade to pay off the tens of thousands of dollars of medical bills our pitiful-at-the-time health insurance didn't cover, I still consider us lucky, because there are a hell of a lot of people out there who don't have a fraction of the support that my family had and will never be without.

     They may not have been well-paid, but at least  my parents both had full time jobs with benefits, and a safe, warm home to live in, one that my dad, along with assorted cousins and uncles and friends, built on the property that my mother inherited from her grandfather. My sister and I may have had our closets supplemented by hand-me-downs from our cousins, but our clothes were always clean and presentable, and we never had to worry that there was a limited amount of food in the house. That's so often not the case for a lot of families, though, and it seems like it always hits hardest at Christmas.

     A few weeks ago, I was reading through the list of the cases, and I just couldn't stand it. I could not in good conscience sit in my warm house, albeit a rented one, and not do something. I fully admit that I was crying as I read through the cases, in part because I'm just a bleeding heart in general, but in larger part because I saw in those families my husband and I. If the cards had fallen just a little bit differently, it could have been our story in that newspaper, and I had to stop and give way to the thought, "There but for the grace of my family go I."

     If you look at that list, (and you should, I linked you right to it) you will notice that the recurring theme, the one that rears its head over and over, is poor health and disability. People so often take it for granted, the ability to get out of bed every morning and earn a living, however large or small. They take it for granted that they don't have to figure out  how to pay for expensive medications AND their children's school supplies, They don't consider what it might be like to face the almost-impossible choice of going to the emergency room to get treatment for the excruciating pain or going to work in spite of it, because if you miss another day, you're out on your ass. It happens every day, every damn day, and it seems sometimes like no one sees the obvious common denominator.

     I see it, and it's one I live in fear of. When my husband lost his job a few years ago, we were scared, no doubt. We had bills to pay, plus the additional cost of the health insurance that we now had to pay for in full, but couldn't go without, because no. The Marfan's causes waaaaay too many problems to risk a performance without a safety net. In my heart, though, I knew we wouldn't go without food, without shelter, without his medicine, because our family and friends would never let that happen, not in a million years. My faith God may be questionable at best, but my faith in my family has never wavered.

     So with this in mind, I called my mom, who works for a non-profit that offers assistance of many kinds to disabled individuals in my home county, to find me a family that my husband and I could help. I told her it would need to be a family, either parents or a single parent, with one child, because my husband and I do not have a great deal of disposable income, and I knew we couldn't take care of more than that. She found someone for us, a young single mother and her little girl; the mother had added her name to a list along with hundred of others, hoping to be "adopted" so that her daughter could have something to open Christmas morning.

     She didn't even ask for any toys or fun stuff, just warm clothes and a pair of slippers. As my heart broke for the 582nd time, I discussed with my husband the woman's requests, and we decided that we were going to do everything we could to give them a great holiday. We probably went too far from a practical standpoint, spending money we don't really have to spend, but neither of us can bring ourselves to give a damn. The truth is, between my student loans and my husband's outstanding medical debt, splurging a bit isn't going to make much of a difference in the long run, so why not just go for it head-first and make someone happy? More, why not take the opportunity to take care of our fellow human beings as best we could?

     I mean, we've made progress on his med bills, with the current balance, while still in the ugly range, better than it used to be, and we've (mostly) made peace with my school debt. So we celebrated by sharing what we've got with someone who has even less, through no fault of thier own, because it could so, so easily have been us. I really believe we would be less than productive, accountable members of society if we ignored that could-have-been and just shook our heads sadly at the situation. Also I'd feel like an asshole.

     Now we have a lovely box of stuff to send, things that I really enjoyed picking out for this family's Christmas. It makes me so happy to think of these two in their new Christmas jammies (pajamas, for those of you who do not remember being five years old), watching their new movies and just enjoying the day; that scenario has kept me going through a really rough week at work, and my husband has told me on  more than one occasion that he's happy we could help. Normally, my neuroses would be screaming right about now, freaking out about the money spent when we're trying so hard to get things paid down, but I've heard not a peep out of my head, not once. It's just peaceful and warm and content in there.

     I will say, I wish there didn't have to be a once-yearly event like Christmas for people (myself included) to think about things like this, because it's a 365-days-a-year struggle that so many face. I think it's important to bring things like this to light (Shocking! She wants to talk about unpleasantness!), that just being a more concerned, conscientious member of society can bring such rewards. In my case, it's a happiness and a calm I haven't felt in forever, and a reminder to be check my attitude when I feel like venting frustrations needlessly. If others can keep moving forward through hardships with a smile on their face, there's no excuse for me not be able to do the same. For my husband, it's a sense of being able to help someone when he so often feels helpless. Here, at last, is something he can understand and relate to, someone he can do something for. It's a good feeling, for once, to feel like we can actually do something for someone else.


Tuesday, December 2, 2014

Dark Side of the Moon

     I have thought about this post since almost the beginning. I have turned it over in my head, cracked the door to the room where it lay, walked away time after time after time. It's been the biggest elephant in the room in a parade of pachyderms, the one topic that was too finely edged to be able to share with the world. I talked to my husband about it last night, as I have on many previous occasions, and even though he reassured me that this is something he wants, that it's even necessary, I still hesitated. I still felt the need to text him earlier and ask again if he was really sure this was okay, and he said to me, "I stand by what I said - no one talks about it, it doesn't get fixed.You can open all the doors you want. Hiding it doesn't do anyone any good." Verbatim. That was pulled directly from my phone. So let me be very, very clear right now, crystal, even - my husband is the one who made the hard choice to tell this piece of our story; I'm just the messenger.

     For him, I would keep this buried, no matter how many thoughts on the subject I have, or who I think it might help. He's reached a place, though, where he feels the need, the desire, to talk about it, and let it be talked about. I think that stems from an acceptance that was won of a long, hellish battle, and a need to have it accepted by others.  This is a turning point, a huge, huge step for him, and a measure of freedom, because it's hard work keeping the demons locked in the basement; those bastards have a tendency to break through with alarming regularity. The fact that my husband is able to keep going, day after day, in spite of the war that's raging, marks him as one of the toughest people I've ever met, and certainly one of the best, because I know that the biggest reason he does it is because of me. The words don't exist to explain how much I love him for that alone.

     That said, may as well jump headfirst down the rabbit hole.

     My husband has major depressive disorder, and has had it for years. It wasn't diagnosed until relatively recently, but it's been there for decades, lurking. It's been the ugliest of monkeys on his back, that one of the many facets of his physical disorder is a mental disorder, mostly because of the astonishingly deep stigma that surrounds mental health in general. It's also a kick in the teeth because he always felt that his brain was the one thing he had going for him, the one thing that he could keep in shape, the way another might work to shape their abs or their arms. When it finally hit home that there was something wrong there, too, it was a much, much harder blow than any that had landed before. He told me once that he had a moment of, "What, my body has failed me, now my mind has, too? Rude."

     In my husband's case, his depression was borne of his physical issues that are the result of his Marfan's Syndrome. He wasn't officially diagnosed with the Marfan's until he was eighteen or nineteen, and even then, even after he had three titanium rods bolted to his crumbling spine at age twenty-two, even after his weakening aortic valve was replaced with yet more titanium in the form of a St. Jude's valve, he was still mostly okay. There were hints of what was to come, moments when he would think to himself that he would never have a family, that he possibly wouldn't live past thirty (before my husband's heart surgery was a widely-used treatment for the aortic enlargement that's a dangerous trait of Marfan's, the average age of survival was around thirty-two or thirty-three, says the all-knowing Google), and those are the kinds of thoughts you don't just shake off.

     It was still very manageable, imperceptible to almost everyone, until a few years ago, when his health really started going downhill at a frightening rate. We didn't know what to do, the doctors had no firm answers, and things were just all-around bad. We were newly-married, and I think he really started questioning his decision to ask me to marry him. I mean, try to see it through his eyes. I'm eleven years younger than him anyway, so that's already a bit of a head trip. Then he had to watch, night after night after early morning after weekend, as I racked up countless bedside hours with him. He saw me go to work sleep-deprived, he saw me working on my college coursework in his exam room in the ER, he saw me writing pages and pages in my journal, knowing that I was trying to let it bleed onto the page instead of onto him and our marriage. He watched it all, and felt helpless. More than that, he felt responsible. How could anyone live with that and come away unscarred?

     It's a cruel reality of chronic illness, one that I rarely see addressed, that the physical hardships often lead to mental ones. I've been by his side for the past half-decade, to dozens of specialists, pain management doctors, primary care physicians, emergency rooms, urgent cares, and damn-near anything else you can think of. I saw it pushing him further and further into a no-man's-land of deep depression, until finally he reached his breaking point. After that, he did seek treatment for the psychological aspects of his disorder, though I'm not sure how successful any of it has been. Hell, at one point it even resulted in yet another overnight in the hospital due to a bad reaction of the anti-depressants and his regular meds.

     I have to pause for a moment and make something clear - when I say my husband's depression is another facet of his underlying disorder, Mafan's, I am speaking ONLY about my husband. For millions of people, major depressive disorder is a stand-alone diagnosis, one that warrants serious and immediate treatment, just like any physical ailment would. Please don't take what I'm saying to mean that all people who have Marfan's have depression, nor that every person who has both Marfan's and depression should associate one with the other. It is entirely possible for someone to be diagnosed with both, and one have nothing whatsoever to do with the other. I can only speak for my husband and myself, and his specific medical situation; I would hate for someone to read this and walk away thinking, "Oh, that one girl who blogs about her husband says that his depression is related to his Marfan's Syndrome, so mine must be, too." No. Stop. Bad. Take as much or as little from this blog as you want, as long as it's not that I'm trying to diagnose or direct treatment over here. Okay?

     I suppose the main reason I wanted to talk about this was because of my and my husband's ever-increasing frustration with the state of mental health care. I mean, Jesus. It's taken almost four years to even be able to admit that my husband has a mental disorder, because it's such a dirty word - mental disorder. People are so forgiving of the physical, sympathetic like you would not believe, but the mental? No. That's not a thing we talk about, not even those closest to him. My mother, for example. God love her, the woman has zero boundaries when it comes to talking about my husband's health. She has no qualms about asking things like, "Has he had a BM today? I know he was on an IV drip of dilaudid, so he needs to watch that." MAMA! Could you not?! The depression, though, that's another story altogether.

     She knows it's there, most people who are close to us know it's there. It's not just something that's only discussed in hushed, hurried conversations, though, it's flat-out not discussed. I'm pretty sure the impetus behind that is a steadfast love for my husband, and that's what makes it bearable. Nobody in his life wants to make things worse than they are, nobody wants to feel more helpless than they already do, and mental health is one of those things that very, very few know how to handle with grace. I'm including trained professionals in that assessment, because my husband has been to no less than five different psychologists since his diagnosis, and not one of them knew what to say to him.

     I mean, I can't really hold it against them too much - I live with him, know him better than anyone, and still, there are moments when I can do nothing but hold his hand and let him know that whatever else, at least we're together, and that's not nothing. The problem, though, is that the less opportunities he has to talk about it, the more he turns inward, and the more isolated he feels. That feeling of isolation feeds the depression, and deeper into the shade he retreats. There's no good answer for it, not that I've come across, and therein lies one of my biggest frustrations.

     There is so, so, so much more to say about this, and I'm going to get there, because we're now officially past the point of no return. One of the reasons my husband gave me the go-ahead to share this was because he's finally getting to a point of taking it for what it is - just another part of the whole, like his back pain or his blood thinners. My hope is that by talking about it like I talk about every other part of his disorder, it will lessen the impact it has on his/our life. I know we can't kill the monkey, but I'm thinking we can sure as hell loosen its grip.